When DBS goes wrong

I first met Vince Hendrickson several years ago in a Rock Steady Boxing class (now StoPD). It was always fun to be with Vince in class. He was always moving faster than everyone else, punching the bag with glee. He had a great sense of humor and inspired the rest of us to just have fun while we were there.

But sometime in the last few years, things started changing for Vince. We could see that he was struggling more and more in class. And freezing when trying to run. I sat down with him last week to talk to him about his experience with Parkinson’s.

Vince was finally diagnosed in 2000, after having symptoms for several years. Like most people with PD, it took a couple of years and testing for several other diseases, such as Lyme Disease and Fibromyalgia, before he was finally diagnosed with PD. His symptoms did not begin with a tremor, but instead with cramping and pain in his joints. His doctor started him on Sinemet (Carbidopa/Levodopa) about 1 ½ years after his diagnosis.

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Vince Hendrickson

Unfortunately Sinemet was not very effective for him.

About 5 years ago, Vince underwent DBS (Deep Brain Stimulation) surgery, which worked very well for him. But a second DBS surgery 3 years ago was not so successful. It turned out that the DBS unit was defective and had to be replaced. So Vince had yet another DBS surgery. Still no improvement. Another problem arose after the second DBS – Freezing.  Suddenly Vince would find his feet stuck to the floor. He has no problem walking up stairs, but when he gets to a flat surface, his feet just won’t move. So how does he deal with this? Vince took a “Big and Loud” course, which has helped with the freezing. He says the class helped him to retrain his mind to walk again. He has learned how to will himself to move. Of course, it becomes much more difficult to do that when he is tired. But I noticed at the end of boxing class that he was actually walking better. Vince agreed, but said that unfortunately the benefit of exercise wears off too quickly.

He has learned how to will himself to move.

Soon after his diagnosis, Vince had read that exercise was best thing for him to do to combat Parkinson’s. Before he found Boxing classes, Vince practiced Tai Chi and rode his bike. He was determined to live an active life-style. Things just didn’t work out the way he had hoped they would. He has had to give up some of the exercises he was doing since his second DBS surgery.

Vince worked for about a year after his diagnosis. He eventually had to apply for disability because it became too difficult to continue his job as a printing press operator. He is fortunate that he has his wife as his caregiver. She goes to all of his appointments with him, advocates for him and is very supportive. They still travel as much as they can. Vince told me that for the stress of airports, they purchased what he called a “Personal Carrier Chair.”  The chair, made by DeVilbiss,  is a Folding Transport Chair , which is essentially a folding chair with wheels that weighs only 19 pounds. If Vince is having trouble walking, all they have to do is open the chair and his wife can push him around. This chair has made it possible for him to travel and do many of the things that he wants to do.

Vince never ceases to amaze all of us in Boxing class.  He does whatever he can, and modifies if necessary.  Instead of running or walking, he will march in place, which he has no problem doing.  He can do just about anything in class that does not involve walking.  And he does it with determination and a smile on his face.  Thank you, Vince, for inspiring all of us.

An evening of Hope

Research begins with the patient, not in the lab

Professor Tamir Ben-Hur

25 people packed into my family room on Monday night to hear Professor Tamir Ben-Hur, the Israel S.Wechsler Chair in Neurology at  Hadassah Hebrew University Medical Center in Jerusalem, speak about the future of Parkinson’s research.  The one word we kept hearing throughout his presentation was “Hope.”  The standing room crowd listened intently to his presentation, hoping to hear those magic words:  we have found a cure for Parkinson’s.  But we all know the reality of our situation, and the best we can hope for now is an improvement in our lives with PD.

Prof Ben-Hur spoke about 3 key points.  First, he spoke about treatments being developed for PD.  One is using stem cells for treatment of Parkinson’s Disease.  Animal models have shown some success with stem cells generating dopamine neurons and movement functions improved.  Unfortunately, the implanted stem cells did not survive very well in humans.  It has taken 10 years to develop an improved method to generate stem cells and implant them and trials in humans will begin soon.   There is an international multi-center effort to find a way to do the tranplant successfully.  It is most likely that they will recruit patients who have movement symptoms. The downside is that side effects  may include increased diskinesias.

He spoke about the direction of DBS (deep brain stimulation) research.  DBS is the most important therapeutic option today. The most difficult thing is finding the exact spot in the brain to place the electrode.  The process he described was amazing.  If the surgeon misses by a mm, the emotional part of the brain can be affected with terrible side effects.  Prof Ben Hur is very excited about the next generation of DBS.  Researchers are looking at a Closed Loop system for DBS.  Brain activity can be read by the system.  When pathological activity is identified, the stimulator will be activitated to correct the symptoms.  It has been shown to work in animal models and is now in development for human patients.  Prof Ben Hur says that this should be available in a few years.

Second, he spoke about what we can do to prevent the disease.  We need to develop a means of early diagnosis to stop the disease early.  In PD, when pathological symptoms occurs, approximately 50% of the neurons have already died off.  Several areas being investigated are:

A blood test – when the brain cells die, some of the DNA shows up in the blood.  There are specific fingerprints that tell us where the  DNA came from in the body.  The technological challenge is to identify such small amounts of DNA.  The hope is that the general population can eventually be screened for an accelerated death of dopamine neurons in the brain, well before clinical symptoms appear.

Another blood test being developed looks for alpha-synuclein aggregation, which may come from the gut nervous system before it moves to the brain, causing constipation.  It may begin as a systemic disease for some people, not in the brain.

Use of a new MRI process, a hyperpolarizer, that shows the metabolic activity of dopamine in the brain.  This has wide ranging implications for PD and for psychiatric disorders.

Finally, he talked the future.  He spoke about using simple solutions that are widely available, not expensive and have no side effects.  One is using powerful anti-oxidants that can cross the blood-brain barrier to reach the brain cells.  Punicic Acid from Pomegranites is one anti-oxidant that is being investigated with positive results.  It is being developed as a food additive, so that it does not need the expense of going through the FDA to get approval.  This should be available very soon.

The final frontier for neurologic diseases is to use bio-markers to predict how the disease will behave and how it will respond to medication.  Treatment can be individualized and specific to the patient.  This also has implications for pharmaceutical research.  Bio-markers can be used to  create clinical studies using a smaller well-defined group of patients for a shorter time period, therefore decreasing dramatically the expense and time-frame for developing effective drugs for approval by the FDA.

Professor Ben-Hur ended his talk with just one word:  Hope

There is Hope for the future in Parkinson’s research and treatment.  As Prof Ben-Hur said, he thinks this will occur during his lifetime – and ours.  Let’s hope he is right.

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Even my dog was entranced by the presentation!

 

A Need to Help Others:  One Woman’s Story

Sunday I had the pleasure of meeting with a group of women with Parkinson’s in Glendale, a suburb of Los Angeles.  Tricia Low had pulled together the group to discuss issues related to Women with PD.  Tricia is amazing.  Her father had Young Onset Parkinson’s so she knew when she started having symptoms at a young age, that she, too, had PD.

The first thing Trish noticed was that her handwriting started to look like her father’s.  She was a labor and delivery nurse and about a year before she was diagnosed she realized that couldn’t read her own handwriting in patients charts.  Her father was diagnosed in the 70’s and the one thing she remembers from that time is that it affected men more than women.  So she never thought that she would get PD.  Looking back, she thinks her symptoms probably started a year earlier, but she ignored them.

First she went to a local neurologist.  He ordered bloodwork and her results were “wacky”. They realized that she probably had Leukemia in addition to Parkinson’s.  The first doctor was not very positive.  He talked to her husband, not to her, in spite of the fact that she was a nurse.  He did not give her any information, so she began to look elsewhere.

She first went to Huntington Hospital, which was filled with “old people with white hair”.  There was no one there her age. She went to hear a doctor there who was speaking about Parkinson’s  and she went up to him and explained that the first doctor put her on Requip and she was havinga bad reaction to it.  The first doctor said she would get used to it.  The second doctor disagreed, so she changed doctors.  He took her off the Requip and made some other changes.

In 2007 she retired from nursing after 25 years. She then became a coordinator for the Parkinson’s Association in the Valley.  The doctor who was working with her found it difficult to maintain a personal relationship with her and be her doctor.  So again she looked for another doctor.   She eventually got an appointment to see Dr. Jeff Bronstein at UCLA and has been happy ever since.

It took about 5 long years to finally get to the right doctor, which has made a huge difference.  

Trish says there are  4 things we must do to cope with PD:

  1. Keep a positive attitude
  2. Exercise every day
  3. Advocate for yourself
  4. Always check for the latest information on the internet

She is always trying new things.  She goes dancing, she boxes to get out the aggression.  She has been inspired by Dr. Maria de Leon’s book to become a Parkinson’s Diva. She prays.  She is a religious person and prayer is very important for her.  Also, her grandfather told her that if you get dressed every day, put your make up on and look your best you will feel better.  Its a great way to keep going.  “I always tell people that I am a pretty package, but a mess inside.”

What makes her story so unique?  She did not expect to be fighting two different diseases at the same time.  She has had 4 DBS implants because she broke the first set!  She fell off a step-ladder and snapped the wires in half.  She set a precident for patients after her because the doctors changed where they anchored the wires so that it won’t happen to other people.

Her advice to the newly diagnosed:  each time you lose something that you can’t reverse, take the time to grieve about it to get the negative out of you.  Exercise every day 30 minutes.  If you believe in God, or some other higher power, get close to them.

Finally, Trish says “what  keeps me fighting is I still have a  purpose to my life. One of my passions is  ‘Caring for people and helping  them along the way.’  So I went from Nursing Moms’& Babies to Parents & Preemies to helping adults with PD.  I want to help them. But having a PURPOSE is high on my list of surviving both my diseases. This truly the end of my
story.” 

   DJ Crawford (Trish’s Mom), Maryanne Moses, Trish Low, Zahra Ehssani, Sharon Krischer and Deanna Ahmed